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Understanding Vulvar and Vaginal Cancers a Guide for People with Cancer, Their Families and Friends

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Understanding Vulvar and Vaginal Cancers a Guide for People with Cancer, Their Families and Friends Understanding Vulvar and Vaginal Cancers A guide for people with cancer, their families and friends Cancer information For information & support, call Understanding Vulvar and Vaginal Cancers A guide for people with cancer, their families and friends First published November 2011. This edition October 2020. © Cancer Council Australia 2020. ISBN 978 1 925651 97 3 Understanding Vulvar and Vaginal Cancers is reviewed approximately every two years. Check the publication date above to ensure this copy is up to date. Editors: Rosemary McDonald and Ruth Sheard. Designer: Eleonora Pelosi. Printer: SOS Print + Media Group. Acknowledgements This edition has been developed by Cancer Council NSW on behalf of all other state and territory Cancer Councils as part of a National Cancer Information Subcommittee initiative. We thank the reviewers of this booklet: A/Prof Alison Brand, Director, Gynaecological Oncology, Westmead Hospital, NSW; Ellen Barlow, Clinical Nurse Consultant, Royal Hospital for Women, NSW; Jane Conroy-Wright, Consumer; Rebecca James, 13 11 20 Consultant, Cancer Council SA; Suparna Karpe, Clinical Psychologist, Gynaecological Oncology, Westmead Hospital, NSW; Dr Pearly Khaw, Consultant Radiation Oncologist, Peter MacCallum Cancer Centre, VIC; Sally McCoull, Consumer; A/Prof Orla McNally, Gynaecological Oncologist and Director, Oncology/Dysplasia, The Royal Women’s Hospital, and Director, Gynaecology Tumour Stream, Victorian Comprehensive Cancer Centre, VIC; Haley McNamara, Social Worker and Project Manager, Care at End of Life Project, Queensland Health, QLD; Tamara Wraith, Senior Clinician – Physiotherapy, The Royal Women’s Hospital, VIC. We also thank the health professionals, consumers and editorial teams who have worked on previous editions of this title. This booklet is funded through the generosity of the people of Australia. Note to reader Always consult your doctor about matters that affect your health. This booklet is intended as a general introduction to the topic and should not be seen as a substitute for medical, legal or financial advice. You should obtain independent advice relevant to your specific situation from appropriate professionals, and you may wish to discuss issues raised in this book with them. All care is taken to ensure that the information in this booklet is accurate at the time of publication. Please note that information on cancer, including the diagnosis, treatment and prevention of cancer, is constantly being updated and revised by medical professionals and the research community. Cancer Council Australia and its members exclude all liability for any injury, loss or damage incurred by use of or reliance on the information provided in this booklet. Cancer Council Cancer Council is Australia’s peak non-government cancer control organisation. Through the eight state and territory Cancer Councils, we provide a broad range of programs and services to help improve the quality of life of people living with cancer, their families and friends. Cancer Councils also invest heavily in research and prevention. To make a donation and help us beat cancer, visit cancer.org.au or call your local Cancer Council. Cancer Council Australia Level 14, 477 Pitt Street, Sydney NSW 2000 Telephone 02 8063 4100 Facsimile 02 8063 4101 Email [email protected] Website cancer.org.au ABN 91 130 793 725 About this booklet This booklet has been prepared to help you understand more about vulvar and vaginal cancers. Many people feel shocked and upset when told they have cancer. We hope this booklet helps you, your family and friends understand how vulvar and vaginal cancers are diagnosed and treated. We also include information about support services. We cannot give advice about the best treatment for you. You need to discuss this with your doctors. However, this information may answer some of your questions and help you think about what to ask your treatment team (see page 68 for a question checklist). This booklet contains separate information for vulvar cancer and vaginal cancer – just read the parts that are useful to you. Some medical terms that may be unfamiliar are explained in the glossary (see page 69). You may also like to pass this booklet to family and friends for their information. How this booklet was developed This information was developed with help from a range of health professionals and people affected by vulvar and vaginal cancers. It is based on international clinical practice guidelines.1–2 If you or your family have any questions, call Cancer Council 13 11 20. We can send you more information and connect you with support services in your area. You can also visit your local Cancer Council website (see back cover). Contents What is cancer? ................................................................ 4 The vulva and the vagina ................................................. 6 Making treatment decisions ............................................ 8 Which health professionals will I see? ................................................... 10 Vulvar cancer .................................................................. 12 What is vulvar cancer? .......................................................................... 12 What are the types of vulvar cancer? .................................................... 12 What are the symptoms? ...................................................................... 13 How common is it? ............................................................................... 14 What are the risk factors? ..................................................................... 14 Diagnosis ............................................................................................... 16 Staging vulvar cancer ............................................................................ 20 Prognosis .............................................................................................. 21 Treatment ............................................................................................... 22 Surgery .................................................................................................. 22 Radiation therapy .................................................................................. 29 Chemotherapy ....................................................................................... 33 Palliative treatment ................................................................................ 34 Vaginal cancer ................................................................ 36 What is vaginal cancer? ........................................................................ 36 What are the symptoms? ...................................................................... 37 How common is it? ................................................................................. 38 What are the risk factors? ....................................................................... 38 Diagnosis ............................................................................................... 40 Staging vaginal cancer .......................................................................... 41 Prognosis .............................................................................................. 42 Treatment ............................................................................................... 43 Radiation therapy .................................................................................. 43 Surgery .................................................................................................. 46 Chemotherapy ....................................................................................... 47 Palliative treatment ................................................................................ 48 Managing side effects .................................................... 50 Fatigue ................................................................................................... 50 Changes to the vulva ............................................................................. 51 Changes to the vagina .......................................................................... 52 Bladder and bowel changes .................................................................. 54 Lymphoedema ....................................................................................... 56 Menopause ............................................................................................ 57 Impact on sexuality ............................................................................... 58 Looking after yourself .................................................... 60 Life after treatment ........................................................ 62 Follow-up appointments ....................................................................... 63 What if the cancer returns? ................................................................... 63 Seeking support ............................................................. 64 Support from Cancer Council ............................................................... 65 Useful websites ..................................................................................... 66 Caring for someone with cancer .................................. 67 Question checklist ...........................................................68 Glossary .......................................................................... 69 How you can help ........................................................... 72 What is cancer? Cancer is
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